new to group and am searching

January 5, 2005

I am new to this group. I am desperatly searching for answers for

my three beautiful and perfect children. Their neurologist and

pediatrician are saying that they probably have mito but nothing has

yet confirmed it. Not blood work on my oldest son or my little

daughter. Not even a muscle biopsy on my oldest. Not even the

muscle and nerve biopsy on me. I am searching for children that are

like mine. Please let me know if you have a child that sounds like

mine. I am willing to go ANYWHERE for answers and help! All three

children had severe reflux as infants, GI issues, speech delay,

etc. Now my oldest has seizure disorder, global developmental

delay, progressive neurological regression (although he developed

VERY advanced at a young age-the school system even said when he was

three that we would end up in the gifted/talented becouse he was so

advanced), reflux, esophogitis, asthma, low blood pressure, ADHD,

OCD, Tourettes syndrome, hypothroid, hypotonia, incontinence, g-tube

for supplemental feeds, episoids of diffuse encyphalophy(SP?),

peroids of extreme fatigue, uses a wheelchair for distances, eye

glass RX getting stronger and stronger at every visit, lost a reflex

in his ear,and on and on. My daughter was born the most affected.

She has craciopharyngeal disfunction, global developmental delay,

hypontonia, malabsorbtion, short stature (some docs say FTT) slow

emptying stomach, bladder reflux, NPO, 24 hour g-tube fed, suction

machine (unable to tolerate her secretions even), incontinent,

making progress in many areas of her life now but her trunk is

beginning to regress by getting weaker, wears KAFO'S, wrist splint,

drives a power wheelchair all the time (not a walker at all),

fatigues easily, cannot regulate her body temperature towards heat,

and on and on. My middle son has several issues of his own but I

thank God that he is the least affected so far. Thankfully he does

not have a feeding tube! All three began their regression between

the ages of 4 1/2 and 5 1/2. All three do not do well with

illness. My daughter gets sick easily (therfore she is homebound)

and when she does she looses MANY skills and it takes FOREVER for

her to recover. My son takes a long time to get over things also.

I know that this is alot of information, but I am desperate to find

some answers and some help. If you or anyone you know sound like my

children, please write! I will go ANYWHERE for help!

Thank you for reading this and for any helpful information,

Laurie

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